Full Flow of Health Data Between Patients and Health Care Systems

Each of us has different lifestyles, habits and daily health challenges. With the additional challenges of managing a chronic illness, such as diabetes, daily tasks can become overwhelming. Today, with wearable health-sensors, smart watches, smart rings, and mobile health apps, those living with health challenges have better possibilities to capture and understand how their lifestyle habits and factors, such as diet and exercise, are affecting their diseases and daily lives. This means e.g., that those with diabetes no longer have to solely rely on clinicians to treat or understand their disease. While some may be "wired" into these self-management tools, the flow of data often stops at the patients? tools. Although clinicians are unquestionably the most reliable source of guidance for patients, they are often unable to see and use the patients' own-gathered data to advise them in their disease management. The treatment therefore might be limited by this situation, even though there exists rich data describing the patients' situation. The research team at the University Hospital of North Norway, the Norwegian centre for E-health research (NSE) and the UiT The Arctic University of Norway has worked together with clinicians and patients for the last 20 years to develop diabetes self-management tools to help patients better self-manage their disease, including the Diabetes Diary self-management app connected to several health sensors. More recently, they have developed a secure web-based system that allows clinicians to view the data from a patient's app, called the Diabetes Share Live. Using these as a foundation, they have worked together with Norway's leading patient record systems DIPS, Hove Medical System and Infodoc to discuss and demonstrate how future systems can communicate information and patient-gathered data between patients and their healthcare contacts. They also partner with Czech Technical University, Aalborg University in Denmark and NTNU in Norway, and have together done research on how such a system should be designed and performed a clinical trial on a secure system for sharing patient-gathered data. The project has educated two PhD-candidates, and published several papers and in other ways disseminated experiences from this health challenge. The clinical trial of a system, where the patients themselves can choose which data they want to share with the health care personnel from their personal app, have been performed and the last results from this will be published during 2021. The patients were able to either share data during the consultation, or remotely during a phone- or video conferencing session, with health care personnel. The clinical trial started November 2018 and lasted throughout 2019. The system was not directly integrated as part of any of the electronic health record (EHR) systems, but rather able to produce reports that could be imported as attachments to the patients' records. Results will hopefully be useful for the EHR vendors when they plan implementation of functionalities for patient/gathered data, and also to inform other actors such as research communities and the national authorities, in the design and implementation of services such as helsenorge.no and other services supporting patients in using their own-gathered data in health consultations.

Prosjektet bekreftet at både ønsket og behovet blant de med en helseutfordring som diabetes, for et system der de kan dele pasientinnsamlede data med helsepersonell, er stort. Videre viste erfaringene med det utprøvende systemet at begge parter fikk bedre forståelse for helseutfordringene og for hvordan pasientene gjennomførte sin egenbehandling på en daglig basis. De data brukerne samlet inn under studien via sin selvhjelps app, og hva de delte med helsepersonell, viste også hva man kan forvente fra mennesker som bruker teknologi for å følge med sykdommen sin. Studien viste også at systemer for deling av pasientinnsamlede data er utfordrende å lage og at framtidige systemer bør ha stor grad av fleksibilitet, både for pasientene og helsepersonells ulike behov og bruk. Designere av slike systemer bør i stor grad inkludere alle brukerne i arbeidet med nye systemer, eller i hvordan integrere slik funksjonalitet i eksisterende system.

People are using mobile phones more and more,such as phones, apps, tracking devices, sensors and smartwatches that gather useful health related data. However, Norwegian electronic health record (EHR) systems do not allow integration of patient-gathered data, and these are far from being compatible with each other. In October 2014, the large US-based EHR company, Epic, demonstrated that data from a real patient could be remotely imported into their EHR system. Norwegian health actors must respond now to catch up with this development. The suggested research project has every necessary component to gather, process and disseminate new knowledge to inform Norwegian industry, health authorities and the research community. Our comprehensive team has collaborated for over 10 years to build a representative and mature patient tool, the Diabetes Diary, which will be used as the basis for the patient system. Our project group includes the main primary and secondary EHR vendors in Norway (DIPS, Infodoc, Hove Medical Systems), a university hospital to conduct relevant testing, four university affiliates, a strong team of professors and senior researchers and two highly qualified candidates for the PhD positions. Together with our technical and medical competencies, we will build upon our expertise on security of technological communication for medical purposes and understanding of how mobile health tools can and should be integrated into a medical system in a way that benefits not only patients but health actors too.